Share the Journey Stories

Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

If, like me, you have hypersomnia, I’m sure you’re no stranger to napping wherever it’s convenient: in class, at a stoplight, under your desk, in a library, in a corner at the bookshop, at a table in the cafeteria, in an empty conference room… this is the reality for so many of us. Heck, as a child, I mastered napping on the mat outside my shower and eventually transitioned to actually napping IN the shower before school. My mother couldn’t figure out what was taking me so long and why our water bill was so high. (Of course as an environmentally responsible adult, I feel terrible about all of that wasted water.)

Having finely honed our napping skills, we now have the opportunity to put them to great use and win some pretty cool prizes. Arianna Huffington’s Sleep Revolution has launched an Instagram contest called “Where Do You Nap?” To enter, simply:

Post a picture on Instagram of your favorite napping spot.

Include the contest’s TWO MANDATORY HASHTAGS – #SleepRevolution &#Contest.

To help raise awareness of hypersomnia, please also include the hashtag #BeyondSleepy.

Eighteen people will win Marriott gift cards and a voucher for round-trip travel on Jet Blue. Drawings will take place on various dates, and only legal US residents are eligible to win prizes. To check out all of the rules and more information on prizes and how to enter the contest, visit http://ariannahuffington.com/contest-rules

The Hypersomnia Foundation received a letter from the Internal Revenue Service stating that we have met all of the requirements to be a charitable organization. That’s right. The IRS has officially approved the Hypersomnia Foundation’s 501(c)(3) status!

Not only are we exempt from paying federal income tax, but contributions made to the Hypersomnia Foundation by individuals and corporations are deductible under Code section 170. You will want to check with your tax advisor, but, basically, this means that any donations made to the Hypersomnia Foundation on or after January 21, 2014, are tax-deductible to the extent allowed by law.

The Hypersomnia Foundation Board members–Cat Rye, Cate Murray, and Jennifer Beard–extend deep gratitude for your ongoing support and enthusiasm. You make all of our hard work worth it every day. We could not have done this without YOU there supporting us and cheering us on every step of the way. The hypersomnia community now has an official charity created specifically to support YOU. Congratulations to everyone! This is a big win for our community and for medical and scientific hypersomnia researchers.

The Hypersomnia Foundation Board members have been hard at work! After countless hours of collaborative work, we have finally completed our 501(c)(3) application and submitted it to the IRS for approval.

One component of the 501(c)(3) application is called “Form 1023 Narrative of Activities”. In the standard 501(c)(3) application process, this section is quite lengthy. In fact, when we, the Board members completed that section, we had over 26 pages of narrative typed out. We wrote at length, and in detail about all of our initiatives and made specific plans for implementing and carrying out each and every one.

After spending countless hours working on this, a new (and MUCH shorter) Form 1023-EZ was recently made available on the IRS website. While Form 1023-EZ is likely to unleash large numbers of ill-prepared and poorly conceived nonprofits that would never have followed through with the filing of the standard Form 1023, the Hypersomnia Foundation feels strongly that we have done our due-diligence by taking our time to properly complete the standard version of Form 1023 before filing Form 1023-EZ. We are happy we took the proper amount of time to consider, collaborate, and create comprehensive plans for all of the initiatives we will pursue now and in the future. We have the best of both worlds! A well laid out plan, and a quick projected approval time.

Once approved, The Hypersomnia Foundation will be able to officially accept tax deductible donations. Our attorney has advised us that entities filing the new Form 1023-EZ are typically approved in a few weeks. Wow! As soon as we receive our approval status from the IRS, you will be the first to know! The good news is that once we are approved, the approval is retroactive back to the date of our incorporation which was January 21, 2014.

This means that any donations made to the Hypersomnia Foundation on or after January 21, 2014, will be officially tax deductible once we are approved!

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